Aboard Dignity (Lagoon 420) Blog

We’ve had a couple of doctors’ interactions. The first with the skin specialist over the phone and the second with Prof Linch face to face.

The long and the short of it is that I don’t have Leishmaniasis. I have a B-Cell Lymphoma, related to the Epstein-Barr virus somehow, expressing itself on my face. The specialists examining my brain tissue won’t let a square peg into a round hole and are saying the brain tissue does not exhibit B-Cell lymphoma. So do I have two separate and rare lymphomas? Or something not yet fully understood. There are more test results due in over the next few days but the Prof things we need to start treatment ASAP. So here I am on the 15th floor of UCH watching the sunset over west London from my fabulous hotel hospital room. Treatment begins tomorrow. I was told what it was but have since forgotten. I’ll take notes next time.

One thing I forgot to mention last blog as it was late news for us too. The Prof had noticed declining white blood cell counts and ordered a bone marrow exam. This I had, had, had, had yesterday. I repeat this for ‘good’ reason. The first person to try failed on her very painful first go. She had a second go promising to get a doctor if she failed a second time. Rather than following her second failure by getting someone more competent she had a third go and failed that too. Each time I was having anesthesia injected in the skin and bone which was very painful. Third time unlucky she finally gave up and fetched the registrar who did a much better job in terms of less pain and successful biopsy. We were then told to rest and wait 30 mins and someone would come and see us. 45 minutes later Helen went off looking for someone and eventually found someone to superficially check on us and send us on our way. I complained in writing today as this is not the treatment we’d expect at a private hospital. Far worse than the same operation I had in Australia which was painless and quick.

Today, although feeling I’ve been run over by a bus we did go out to see a house in Chesham.

http://zoop.la/13Da7gk

It was really nice but a little too big for the two of us and certainly too big if Helen has to stay somewhere on her own.

The pace has certainly gone out of our house hunt but deep down we both want somewhere to really call our own. That bungalow we first saw in Chesham is still on the market.

http://zoop.la/ZQWCrT

We may back and see that a second time. Lovely house but not the ideal location. We’re not caring so much about the latter at the moment.

Thanks to everyone for all your great messages of support. Helen and I were both upset to hear the news of relapse but had expected it. In a lot of ways we feel better knowing the ball is rolling. Results from the brain biopsy analysis, skin specialist and hip biopsy, biopsy, biopsy, biopsy should be in soon and we’ll hopefully be in a position to start treatment soon.